hands making heart
Ryan Pierce just finished first grade at Trafalgar Elementary in Cape Coral. According to his mom, Kelly Link, her seven-year-old son “is independent, strong and determined, and he doesn’t let anything stop him. He knows what he wants, and he won’t settle for less. He doesn’t let other people get him down, and he won’t let anyone tell him that he can’t do something. He will complete the task at hand, and better than they’d ever expect. Ryan’s force to continue on has been his life story from day one.” He loves his brothers Cody, eight, and Jacob, five, playing video games, reading, riding his bike, doing puzzles, playing basketball, and being outside.
Ryan was eight weeks old when he experienced serious trauma that resulted in seizures and a diagnosis of traumatic brain injury, frontal lobe syndrome, and other injuries that caused significant developmental delay. Ryan had years of physical and occupational and speech therapy to get back on track with his milestones.
There was an expectation that other conditions would surface later, and they did. Ryan developed severe acid reflux disease. Constant vomiting left his teeth with no enamel, and he has needed extensive dental work. When Ryan was five, he was diagnosed with growth deficiency. He now takes daily injections to stimulate his body to grow. He also has severe allergies which require three medications a day. His mom relates that he suffers when the pollen count is high but he maintains his strength and composure. Kelly is inspired by Ryan’s ability to cope. “I would be such a wimp if I went through five percent of what he goes through daily,” she says.
Ryan also is being treated for attention deficit hyperactivity disorder (ADHD). “We knew he had this since he was a little child and we knew there was a large likelihood that he would get it from the brain injury,” Kelly says. “We were able to hold off on medicating him until recently. Ryan’s teacher this year (Ms. Darley) was absolutely amazing with him. She let him stand by his seat, or wander around the classroom if he needed to.” Ryan has some accommodations for standardized testing through a 504 Plan in accordance with the Americans with Disabilities Act, and he is mainstreamed.
“Anytime you find out about a disability, or condition, it’s nerve wracking,” Kelly says. “You want to know everything you can about it. You want to know the best treatment options, the symptoms, and the prognosis. Every time we find out about another need of Ryan’s, we wonder how many more there will be. We understand that this is all a part of the life that Ryan’s been given. We work our way through it together, and as a family, and we are stronger because of it,” she adds.
Knowing and Believing
The Links are a blended family, and Mark Link knew that Kelly had a child with special needs when they married this past September. “Every time that I feel like Ryan and I have a setback, Mark is right there to tell me that we will get through this one too. Coping skills in our house are something as simple as knowing and believing that we will get through this together. We have come this far, and we have gone through so much. We can get through anything,” says Kelly.
When Ryan was a baby, the family travelled frequently to St. Petersburg for medical help. Over the years, more pediatric specialists have moved into Lee and Collier counties to meet the growing demand. “I feel like there could still be more specialists,” Kelly says. “I hate to see the wonderful specialists we do have get burnt out. I think having more support groups in the area would be helpful. The opportunity to talk to other parents that are in the same shoes as you is often extremely helpful,”
Hang in There
Also, Kelly advises other parents to “Hang in there.” She acknowledges that sometimes it’s rough and even overwhelming, but it does get easier. She tells other parents of special needs children to “research everything. Know the diagnosis that you’ve been given, and don’t be afraid to ask questions. If you can find someone who has been in a similar situation, ask them. Being the family of a special needs child isn’t what you expected. It has its highs and lows. I have learned so much, and I have met so many wonderful people.”
According to Kelly, Ryan doesn’t know that he has special needs. “He just believes that he has more medical problems than his brothers. Ryan loves his family, but even more so he loves his life,” she notes. Isn’t that what we all want for our children?